Aida Luz Maisonet Giachello, Ph'D'

1

Ethical Issues and Challenges of Partnering with
Recent Immigrant Communities

Aida Luz Maisonet Giachello, Ph.D. Associate
Professor Director aida_at_uic.edu May 15, 2009
Improving Health With Communities The Role of
Community Engagement in Clinical and
Translational Research
2

• Purpose of Presentation
• Describe selected characteristics of immigrants
• Description of Framework for understanding
  ethical challenges
• Ethical Challenges in studying migrant
  communities
• CBPR Strategies for meaningful community
  partnership and to address ethical issues
• Strategies Lessons learned

3
Who are immigrants?

• Individuals and families who enter US for
  purposes of permanent resettlement.
• There are three broad categories
• Voluntary migrants come to join relatives already
  settled in the US or to fill particular jobs for
  which expertise may be lacking among US nationals
• Refugees and asylum seekers enter the country to
  avoid persecution
• Undocumented persons enter or stay illegally

4
Who are Refugees?

• Persons who experience persecution due to race,
  religion, nationality, or membership in a
  particular social and political group, and who
  is unwilling to avail himself/herself of the
  protection of he/her country (United Nation High
  commissioner for Refugees, 1951, Article 2)
• Definitions of refugees or immigrants can be
  vague and are tied to U.S. foreign policy

5
Selected Facts aboutImmigration to the U.S.

• In 2007, 37.2 million immigrants over age 5 lived
  in the US, constituting about 13.3 of the total
  population (American Community Survey, Table
  S0506)
• Language use
• In general, 84.2 of all immigrants speak a
  language other English
• 52.4 report speaking English
• less than well
• 25.4 entered the US in the year 2000 and later
  30.3 between 1990 and 1999, and 44.2 entered
  before 1990

6

• New legal immigrants approved for entry into the
  United States is declining, partly because of
  entry restrictions imposed since the events of
  September 11, 2001
• The number of applications pending continue to
  increase, indicating that many people are still
  seeking to immigrate into the United States

7

Source US Census, 2000
8

• Source US Census, 2000

9
The Legal Status of Immigrants, 2000
Note Percentages ma not total 100 due to
rounding Source Passet, J. U.S. Immigration
Trends and Issues, 2003.
10
Ethical Responsibility

• Ethics involve the responsibilities that
  practitioners have toward their clients/patients
  and to the public in general
• In the area of research, it refers to the
  responsibility that researchers bear toward those
  who
• participate in research
• those who sponsors research
• and, those who are potential beneficiaries of
  research

11
Ethical Responsibility..

• Ethical issues do not exist in a vacuum
• It exists within the context of a particular
  society and its historical development
• The efforts in focusing on ethical issues are
  based on major events that have affected racial
  and ethnic minorities and women in the past
  century

12
Ethical Responsibility..

• In Chicago, in the 1960s Hispanic/Latino
  immigrant women were sterilized (e.g.,
  tubalization) after delivery a child without
  clear medical reason and without proper consent.
  
• It was based on the fact that the OB-GYN though
  that the women already had too many children and
  were living below poverty
• At that time there were lack of forms in Spanish
  and lack of bilingual staff

13
Ethical Responsibility..

• Abuses have led to ethical regulations first in
  medical research and most recently in behavioral
  and social sciences research
• Despite formal ethical standards for research,
  and establishment of the Institutional Review
  Boards (IRBs) in Universities and other research
  institutions, ethical violations still exist

14
Ethical Responsibility..

• Women, racial and ethnic minority populations,
  the poor and immigrant populations are most are
  risk
• Therefore, we need to understand that
• much behavioral and social science research on
  immigrants and refugees is not morally neutral

15
Ethical Responsibility.

• Immigrant policies are hotly debated in our
  society
• Supporters of immigration policies argue that
  immigrants benefits the country but may need
  special programs to assist them in their
  adjustment
• Opponents suggest that immigrants drain resources
  that could be spent on other national priorities
• Source Birman, D. (2006). Ethical considerations
  in research with immigrants and refugee
  populations. In Handbook of ethical research with
  ethnocultural populations and communities. Sage

16
Ethical Responsibility.

• Research on the experiences, adaptation and
  social and health disparities of immigrants is
  used and misused to argue both sides of the
  debate
• The use of research places great responsibility
  on the researchers who study these populations
• Findings from the research studies may be used
  to inform policies that have great impact on the
  lives of people

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Ethical Responsibility

• Defining ethical responsibilities for the
  researchers is a complex when working with
  immigrant and vulnerable populations
• Researchers need to balance humanitarian concerns
  with scientific rigor
• Furthermore, balance potential differences in the
  ways ethical behavior is defined by the culture
  of the researcher
• Diverse cultures with conflicting definitions of
  what is ethical

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Ethical Responsibility

• Informed Consent
• Refers to telling potential research participants
  about all aspects of the research that might
  reasonably influence their decision to
  participate
• It focuses on an individuals freedom and
  self-determination

19
Ethical Responsibility

• Informed Consent must address Aspects of
• Confidentiality
• The protection of the identity of potential
  participants when research results are presented
• Privacy
• participants ability to control and to determine
  when and under what conditions research staff
  will have access to their beliefs, values,
  behaviors and clinical testing and information

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Ethical ResponsibilityInformed Consent..

• Discourse of research results
• Researchers must be honest, and must assure that
  the sponsored of the research will not violate
  the ethical principals described above
• Physical or mental distress or danger
• If some distress may exist in their participation
  in a given study, researchers must fully inform
  participants

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Ethical principles to be Followed

• Veracity
• Beneficence
• Non-maleficence
• Justice
• Autonomy
• Fidelity

• Be truthful
• Do good
• Do no harm
• Distribute goods fairly
• Indiv free choice
• Keeping ones word

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Ethics are rooted in a core set of values

• Services
• Help people in need
• Social Justice
• Pursue social change and challenge any social
  injustice

• Dignity and Worth of the Person
• Treat each person in a caring and respectful
  fashion
• Promotes socially responsible self-determination

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FIGURE 1
Factors that may place Immigrant Communities at
Risk for Potential Harm in Research
Factors Associated with the Research Process
Factors Associated with Research Funding Sources
Ethical Challenges Community Partnership
building
Factors Associated with Research Institutions
Factors Associated with Researchers
Characteristics of Recent immigrants
immigrant communities
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Ethical Challenges in Studying Immigrants
Related to the Research Process

• Limited research and population data
• Difficulties in defining, segmenting and finding
  target populations
• Immigrant communities experiences serous
  undercount by US census

25
Ethical Challenges Related to the Research
Process

• Lack of data makes detailed planning difficult
• Studies are often based on
• assumptions
• observations
• anecdotal evidence
• ----? Poor hypotheses and research designs and
  inadequate recruitment planning

26
Ethical Challenges Related to the Research
Process

• Problems with sample sizes
• Samples that include multiple ethnic subgroups
  must have sufficient participants for meaningful
  analyses
• Researchers may decide to concentrate on larger
  single immigrant groups or use broader categories
  such as Hispanic/Latino, Asian or black or
  grouped them in existing categories

27
Challenges to Researchers

• Inadequate data collection instruments and
  measures
• Not designed nor sensitive to cultural contexts
  or translated
• Poor translation
• Poor acculturation measures
• instruments may be biased along racial/ethnic,
  SES or gender lines
• Difficult to adapt to populations with low
  literacy

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Challenges to Researchers

• Differences in reliability validity of survey
  responses across languages and cultural contexts
  instruments may have been fully tested

29
Ethical Challenges Associated with the
Researchers

• Few bilingual/bicultural research team members
• Limited culturally appropriate strategies in
  recruiting and retaining participants
• Limited community participation

30
Ethical Challenges Associated with the
Researchers..

• Results of a researchers mail survey (n28)
• 88 of clinical researchers (from academic
  institutions and medical centers) reported that
  with the exception of the media, they have no
  knowledge and skills on how to reach out to
  minorities and women inside and outside their
  institutions (e.g., teaching hospitals)
• Source Giachello et al 2000

31
Ethical Challenges Associated with the
Researchers..

• 90 reported that they have difficulties in
  recruiting minority patients in their own
  institutions due to
• competition for patients between departments and
  units
• lack of internal referral systems
• lack of institutional commitment to serving
  minorities and women, etc.

32
Ethical Challenges Associated with the
Researchers..

• 67 of the researchers admitted that the
  inclusion criteria that they develop for patient
  recruitment and enrollment tends to purposely
  exclude minorities and women, etc.

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Challenges Associated with Funders

• Funders at times lack understanding of the
  challenges in working with immigrant populations
  and the resources needed in study immigrants
• interpreters
• Translation
• community health workers (recruitment,
  navigation, retention),
• Time needed to establish and maintain
  partnerships
• Develop health literacy appropriate materials

34
Factors that Place Immigrants at risk for
potential Harm

• Challenges related to adaptation to the US
  mainstream culture
• Limited familiarity with US institutions and how
  to navigate these systems
• Often live in poverty
• Live in isolation and experience depression

35
Factors that Place Immigrants at risk for
potential Harm

• Diversity within groups by
• Nationality
• SES
• Language
• Culture (values, attitudes, behaviors)
• Differences in acculturation (recent arrivals
  compared to those immigrants here for several
  years)

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Factors that Place Immigrants at risk for
potential Harm.

• Many have difficulties maintaining ties to their
  culture of origin and families
• Experience ethnic and racial discrimination
• High mobility within US and between US their
  country of origins

37
Factors that Place Immigrants at risk for
potential Harm.

• Distrustful of government entities and research
  Institutions
• Undocumented persons may shy away from
  participating in research studies for fear of
  being identified by authorities

38
Factors that Place Immigrants at risk for
potential Harm..

• . Who Reported YES About Recent Experiences
  Related to Immigration status
• Have you ever been questioned about your legal
  status
• 71 of Latino Migrant Farmworkers
• - 50 of Latino Non-Migrant
• Farmworkers
• Source 2008 Illinois Latino Health Study

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• Who Reported YES
• Fear of deportation by health and social services
  organizations Government entities
• 35 of Latino Migrant Farmworkers
• 26 of Latino Non-Migrants
• Avoid seeking health services due to fear of
  immigration officials
• 32 of Latino MFW and 22 of Latino
  Non-M.

40
Factors that Place Immigrants at risk for
potential Harm..

• Low levels of formal education
• Try to cover up their limitations
• Limited English Proficiency
• Do not know how to read or write English
• Even if they have a HS degree
• Can lead to exclusion from research
• Many recent immigrants overestimate their
  proficiency

41
Factors that Place Immigrants at risk for
potential Harm..

• Language barriers (LEP)
• Lack of bilingual and bicultural clinicians,
  research staff, and interpreters
• Those available may not have the training
  relating to research area and its complexities
  (Example Genetics)
• Interpreters often are not available, resulting
  in delays and re-scheduling of appointments

42
Factors that Place Immigrants at risk for
potential Harm..

• Low comprehension/knowledge about their rights as
  research participants
• Participants tend to still be confused after
  reading Consent Form
• Regarding
• Nature and Consequences of their participation

Source Gotay, 2001
43
Factors that Place Immigrants at risk for
potential Harm..

• Communication gaps and problems
• Researchers and physicians
• Provide brief descriptions of protocols
• Use too many technical words
• Use colloquialisms when they present information
• May display an attitude of intimidation and
  superiority
• May establish distance with the patient, instead
  of fostering trust

44
Factors that Place Immigrants at risk for
potential Harm..

• Communication gaps and problems
• Managed care plans often allocate limited time
  for patient-doctor communication.
• Could result in poor understanding of a study
  referral
• The anxiety associated with the diagnosis of a
  condition or complication
• May cloud patient ability to process information
  such as that found in consent processes and forms

45
Factors that Place Immigrants at risk for
potential Harm..

• Cultural factors
• Due to cultural pride, Latinos and others will
  not admit confusion
• They will not follow the instructions, treatment
  or return
• Passive attitudes toward authorities

Source Cooper, et al 2004
46
Factors that Place Immigrants at risk for
potential Harm..

• Cultural characteristics
• Physicians and nurses, and anyone who wears a
  white gown are viewed as persons of authority
• People tend to accept the physician
  recommendations
• Without questioning or regardless of what the
  consent form may say about risks in participation
  or the potential treatment side effects

47
Other Factors that make it difficult to study

• Challenges in inclusion and retention in
  longitudinal studies (need to re-interview or
  follow up participants)
• Occupation/work status (time priority, schedule)
• Educational level - scientific/health literacy
  (do not understand the value of research and its
  benefits)
• Income, Age, gender, household role (parenting).
• Telephone coverage/continuity (contacting)
• Household stability/mobility (tracking)
• Also religious affiliation, acculturation,
  migration status, travel

48
Factors that Place Immigrants at risk for
potential Harm..

• Barriers to access to health care
• Least likely to
• Have a medical home
• Have health insurance
• Have preventive screening
• Younger immigrants may have lower medical needs
• Others use health services less and later in
  disease development

49
2008 Latino Health Survey
who could not afford Medical Care in the past
year in the last year,
50
Lessons learned

• I will argue that the best way to study immigrant
  communities is by establishing meaningful
  partnerships with immigrant communities

51
Phase I Participatory Action Research
Coalition Building Model
1
2
3
4
Giachello, 2003)
6
Community Entry interviews
Partnership Formation
Capacity- Building (Training)
Assessment, Data Collection Analysis
Dissemination of findings Community Consultation
Finalize ACTION PLAN (logic Model)
Process
Values Goals Objectives
Community Dialogue
Orientation
Ethical/ IRB training\
Telephone Survey
Community Forums/Town Meetings
Activities
Strategies
Research Topic
Focus Groups
Problem Definition
Establishing Groups norms
Formations of Committees
Strengths Limitations
Resources Needed
Analyses of Epidemiological Data
Community engagement
Project Community Group
APPLIED Research Methods
Evaluation
Resource Survey Community. mapping
Community Organizing
On-Going
52
UIC Phase II Participatory Intervention
Evaluation Planning (GIACHELLO, 2005)

1
2
3
4
5
6
Coalition Reorganization
Coalition Focus (Action Planning)
Capacity- Building (Training)
Program Planning Evaluation
Implementation
Committees
Process
Capacity Building
Expansion of partnership
Retreat
Computer literacy Ethics (consent) Field
evaluation
Coalition Effectiveness Survey
Reorganization of Staff
Activities
Quality care Improvement
Topic areas
Centralized Data System
Strengthening (on-going)
Setting Priorities
Pilot Testing interventions (e.g., curriculum)
Policy
Community Awareness Education
Specific Interventions
Other training
Reorganization of Committees
Evaluation
Developing An Operational Plan to Implement Eval
Protocols
Community Organizing
On-Going
53
Getting Started in working with immigrant
populations

• Assess your level of readiness
• Why do you want to study/include immigrant
  communities?
• Is it funding opportunities?
• Is it to meet funding requirement?
• Is it due to institutional or community
  pressures?
• A sense of social justice?

54
Getting Started .

• Assess levels of readiness
• Do you have previous experience or history of
  working with immigrant populations?
• Do you have the time to initiate and sustain the
  partnership?
• How is your institution viewed by the community
  and its gatekeepers?
• For example, are ethnic clinicians afraid you
  will take away their patients?

55
Getting Started..

• Assess levels of readiness
• Do you or people in your institution have the
  necessary skills?
• Communication and language skills
• Cultural proficiency, competency and cultural
  humility (commitment to self-evaluation and
  self-critique)
• Ability to share power and control over decisions
• Group facilitation and interpersonal skills

56
Getting started..

• Become familiar with the immigrants
• Demographics (Age structure may determine
  recruitment outcomes, prevalence of conditions)
• Their immigration history and cohorts
• Epidemiological patterns and their determinants
• Geographical concentration and mobility
• Community institutions (places of worship, CBOs,
  sport clubs, schools)

57
Getting StartedAssessing immigrant populations

• Immigration motives and experience (traumas)
• Acculturation levels
• Language skills (LEP)
• Literacy/education
• Urban/rural/suburban
• Religion/spirituality
• Family/household structure

• Family networks
• Family leadership
• Community participation
• Experience with health providers and systems
• Use of indigenous alternative healers

58
Lessons Learned From CBPAR with Immigrant
Communities

• Engage the community in the entire research
  process (grant application phase through the
  study)
• Define the community
• Identify the stakeholders. Develop an inventory
  of potential partners.
• Inquire What individuals and organizations have
  influence and/or are directly or indirectly
  affected by the problem?

59
Lessons Learned

• Assess community strengths, assets, and needs
• Connect with community gatekeepers
• Conduct interviews with opinion leaders
• Conduct interview with Opinion leaders
• Form a planning committee
• Conduct a community meeting

60
Lessons Learned.. Apply Principles of CBPR
(Israel, et al)

• Community is treated as a unit of identity
• Builds on strengths and resources within
  communities
• Facilitates collaborative, equitable partnerships
  in all phases of research
• Promotes co-learning and capacity-building

Source Israel, B. et. A. (Critical issues in
developing and following community based
participatory research principles. In CBPR for
Health (Minkler and Wallerstein)
61
Principles of CBPR (Israel, et al)

• 5. Integrates knowledge and action
• 6. Emphasizes local relevance and multiple
  determinants of health
• 7. Implements an iterative process
  build-flexibilityresearch should plan for more
  time, and resources

Source Israel, B. et. A. (Critical issues in
developing and following community based
participatory research principles. In CBPR for
Health (Minkler and Wallerstein) , 2005
62
Lessons Learned

• 8 Disseminates findings and knowledge be careful
  in identifying communities by name or groups
• 9. Involves a long-term process and commitment
• What happens after funding ends? Depends on
  capacity-building (leadership development
  proposal writing skills and where there may be
  funding

63
Lessons Learned from CBPR with recent immigrant
communities

• Immigrant communities are heterogeneous
• Locating and integrating into this community
  takes time
• Try to understand the local dynamics by
• Identifying existing networks
• Recent arrivals use word of mouth of fellow
  immigrants as health information

Martinez IL, Carter-Pokras O, Brown PB.
Addressing the Challenges of Latino Health
Research Community-based approaches in an
emergent urban community. Journal of the National
Medical Association (In PressExpected September
2009)
64
Lessons Learned using CBPR with recent immigrant
communities

• Consider the positive impact of immigrants on
  local communities, economies, labor,
  entrepreneurship
• Identifying community-based organizations that
  have served earlier waves of immigrants
• Build on existing networks of immigrant
  providers, advocates, and community members
• Identify issues of concerns to immigrant such as
  legal status, discrimination, and access to
  resources
• Building TRUST is crucial
• Be aware of the demand on your time Community
  hours vs. University hours
• Challenges of working in groups

Martinez IL, Carter-Pokras O, Brown PB.
Addressing the Challenges of Latino Health
Research Community-based approaches in an
emergent urban community. Journal of the National
Medical Association (In PressExpected September
2009)
65
Lessons Learned from CBPR with recent immigrant
communities

• Promotes co-learning and capacity-building
• Special skills required to work with communities
• Interaction with community
• Beyond the confines of the University
• Build research skills among community members
• They can conduct interviews, focus groups,

Martinez IL, Carter-Pokras O, Brown PB.
Addressing the Challenges of Latino Health
Research Community-based approaches in an
emergent urban community. Journal of the National
Medical Association (In PressExpected September
2009)
66
Lessons Learned from CBPR with recent immigrant
communities

• CPAR process can be adapted to engage community
  partners in examining evidence based research and
  what works with the investigators in deciding
  what programs

67
Lessons Learned in addressing ethical issues
with Community Partners

• Establish Community Advisory Boards with
  meaningful input in the research design and
  consent process
• Build Trust
• In some recruitment ads, the word research is not
  mentioned. Research as a concept does not even
  translate well into some languages or have
  meaning for persons with low literacy.
• Many people who volunteer in the hope of getting
  a new treatment end up receiving a placeboa
  treatment such as a sugar pill, that has no
  medical effect.

68
Lessons Learned..

• Be clear on what you are asking from participants
  in the Consent Form
• Use verbal and written informed consent
• Use simple terms and visuals, if possible
• Use videos to inform participants
• Involve family and significant others based on
  cultural and personal privacy preferences
• Community Representatives can review and simplify
  the language, help with translation, etc
• Have clear tasks and timelines up front for them,
  and incentives or recognition for their work

69
Lessons Learned

• In the Consent Form
• Address Confidentiality issues
• The protection of the identity of potential
  participants when research results are presented.
• do not ask legal status, do not ask for social
  security number
• Addressing Privacy issues
• Participants ability to control and to determine
  when and under what conditions research staff
  will have access to
• Minimize coercion
• Avoid interviews with other members of the family
  or friends being present
• Be sensitive to secrecy

70
Lessons Learned.

• In the Consent Form
• Translate materials with members of the target
  communities
• Use trained bilingual/bicultural community staff
  and interviewers to develop, review and translate
  Informed Consent

71
Lessons learned

• Autonomy(individuals free choice)
• Preparation of recruitment materials
• Should have clear and accurate information
• Selection of participants
• Interview people away from areas where violation
  of privacy or confidentiality may occur
• Compensation vs. coercion
• Provide fair compensation for time and efforts,
  but not excessive to minimize coercion

72
Lessons Learned

• Assure confidentiality protection of the
  information
• Train community interviewers and ask them to
• Sign confidentiality agreements and do IRB
  training as condition of employment
• Assure that they can remain in the project during
  its duration

73
Lessons Learned.

• In focus groups, when information is on sensitive
  matters
• Obtain verbal consent
• Use nicknames
• Make sure that other identifiable information is
  secured and destroyed right after the data is
  processed

74
Lessons Learned.

• In focus groups consent form is
• Read out loud, and
• Additional staff should be available to assist
  individuals in fill out forms
• (e.g, Participant surveys or profiles, etc.)

75
Lessons learned

• Decision to participate in studies may be subject
  to
• What people hear or read in the media
• We must educate the media, especially the ethnic
  media
• Influence of primary care physicians and family
  members
• We must take time to educate physicians and
  other clinical staff

76
Lessons learned

• Address issues of Justice
• Distribute benefits and burdens of research
  fairly among individuals, populations and in
  society at large
• Work with community partners to develop referral
  systems to address financial and institutional
  barriers to access to health care
• Assist your research institutions to include
  community representatives in the IRBs process

77
Lessons Learned

• Develop realistic and feasible research plan
• It usually takes a lot more time and resources
  that projected
• We have to make sure that the research has some
  immediate applicability for the community

78
Conclusions

• It is critical to increase participation of
  immigrants in research
• Get to know the immigrant population
• Use CBPAR to address the ethical challenges
  involved
• Take time to develop and sustain community
  partnerships
• Apply linguistic, cultural and health literacy
  approaches in all efforts

79
Conclusions

• Draw on the experiences of the members of the
  target group to provide cultural perspectives
  and expertise to the research project (e.g.,
  knowledge, beliefs and practices, preferred
  sources of information)
• Develop community resources to support research
  efforts (e.g., recruitment, access to local
  media, in-kind support for activities)

80
Conclusions

• Hiring and training recruiters and staff members
  indigenous to the population such as community
  health workers, front desk staff, and other
  paraprofessionals
• Involve the community in the design and testing
  of materials through qualitative methods
• Assure that these materials represent target
  population/audience or its preferences in the
  materials

81
Conclusions

• Conduct cognitive testing for comprehension and
  readability of materials and translations
• Framed messages to the audiences cultural
  values, beliefs and practices of the target
  population
• Sample sizes, messages, and recruitment plans
  should be based on epidemiological and other
  data.
• During analysis and dissemination, provide
  ethnic-specific data, but limit comparisons to
  dominant or better off groups